Feeds:
Posts
Comments

Posts Tagged ‘eye doctor’

I’ve been sick, finally feeling a little better.  There are major changes in my house.  Almost overnight M decided he’d had enough of being a couch potato.  He joined a gym and goes every day at 5am.  He bought all kinds of vegetables, fruit, wheat germ, seltzer, salmon, low-fat milk, nuts and berries and healthy shit.  So I’m trying to get on board to encourage and support him by exercising, doing weights, and eating well, but I still sneak a coke once a day or two.  Soda…it’s my worst vice.  How funny is that?  I don’t even drink alcohol, or even eat much meat anymore.

I was pretty sick on Saturday when I drove my mom down to first get her car from the transmission shop in Kingston and then to Andy’s.  When we arrived at the shop, her car was all fixed and they told her she has a zero balance.  Evidently someone paid the $1800 bill for her. A stranger?  A rich relative?  She doesn’t know and nobody will tell her.  How’s that for an awesome start to the day?  Needless to say my mom was in a happy state of shock when we got to Andy’s.

I’d seen Jonah two days the week before, for two different doc appointments two days apart…his juvenile arthritis doc and his eye specialist (the one who did his operation).  Both times I met the incredibly awesome caregivers from Anderson School who transport the children to their doc appointments.   Every single one of them is amazing, even when they must be so very tired from getting up at the crack of dawn to gather Jonah and drive him 90 minutes to an 8am doctor appointment.

Not only was Jonah a little angel for both appointments, but we get great news from both doctors too.  His arthritis has mitigated and the pressure in both his eyes is nice and low – 12 in one eye and 17 in the other.  I asked the eye doc if his left eye had any sight at all and she said not really, he can just see shadows, which I knew but couldn’t help asking again.  Now we just protect that right eye with everything we’ve got.

Happy Boo

Happy Boo

When we arrived at Andy’s apartment Jonah was good again…lovey and eager to take my mom’s soft case, unzip it, and put all the sandwiches, bags of chips, and drinks away, opening cabinets and the fridge and systematically putting everything in its place.  He even did the dishes (well, a coffee cup and a plate) with aplomb.

diligently working

diligently working

He has come so far and done so much in the 2 1/2 years he’s been living and learning at the Anderson School for Autism.  He is more and more independent every day, with fewer aggressions, and I couldn’t be happier or prouder or more grateful.   I can’t believe he is almost 12.

I was contacted recently by a mom who is in a similar situation we were in, and I promised to help her in any way I can.  The bottom line is there needs to be a place where children who need residential placement can go until there is an opening somewhere.  Without it families are torn apart (the woman who contacted me had to move her two other children to a relative’s house for their safety).  It is not a matter of convenience.  It is a matter of sanity.  Of danger.  Of real risk of injury or even death, especially if the aggressive child is big, strong, or, like Jonah, simply out of control – smashing TVs, windows, and hitting, kicking, biting…

It is a disgusting thing when the most vulnerable population becomes also dangerous, and there is nowhere to turn for help.  Not the police, not the local psych centers, not the ER.  Nowhere. 

I promised long ago (and in this blog) that I would advocate someday, and so here I go.  There is an advocacy day in downtown Albany on the 11th and I will be there along with people from Anderson and other concerned nonprofits, fighting for COLA (cost of living adjustment) which has been denied these important nonprofits for 6 years.  Then I am going to make  appointments with my assemblyman and senator.  Hopefully I can get some other moms and someone from Anderson to come with me, and we can make some change happen.  How, I don’t know.  I need to research.  I need to learn how these things work.   And I need to control my temper, because this REALLY pisses me off.

On a terrible note, I was shocked and saddened to hear of Philip Seymour Hoffman‘s death-by-heroin.  Good God, what a waste of a fantastic actor and father and, evidently, a really cool guy, his rumored temper/testiness notwithstanding.  Heroin is the devil.  The needle and the damage done.  I wish these actors and musicians and everyone could learn from those who have gone before them.  I guess nobody thinks it can happen to them.

But now that Boo is doing better I can focus on this work, on my work with Modest Needs (I am learning to be a Grant Writer), and my work with the Interfaith Partnership for the Homeless.  Not to mention learning to play guitar, and getting healthier and stronger and smarter and happier.

Read Full Post »

Last Saturday I brought the big-ass pillow with us (the kind that you use as a backrest, with two “arms” on either side) and we successfully got all 4 of us in the car for a ride.  The pillow served to protect the backseat occupant with its bulk and punching-bag-like sturdiness.

The way we accomplished it was to put the pillow in the backseat right from the time we picked Boo up at the residence, and then after his lunch, we told him “we’re all going to the grocery store and grandma’s coming too.”  When he started to protest we reminded him that we’re going to buy chocolate donuts but only if grandma can come.  And by gosh, it worked.  He was even good in the car — he liked the pillow and rubbed it as we drove along.

Boo with his new grey pillow

Boo with his new grey pillow

a soft barrier

a soft barrier

I taped a small conversation we had along the way, though he’s parroting through most of it:

Overall it was a good visit.  At the store Boo successfully navigated the cart politely around other shoppers to the exact location where the beloved chocolate donuts awaited his arrival.  This Saturday we switched our visit to Sunday, so I will see him tomorrow, on Father’s Day, then come home in time to take my own dad out for dinner.

Instead M and I indulged in other plans, afterward ending up driving near Thatcher Park.  What a gorgeous day.

gorgeous day for it

beautiful

the bluest sky

the bluest sky

When we got home M wanted a nap so I took a walk alone to Buckingham Park and took some more pictures, then made some “nature art.”

Always there are ducks and geese, fish and turtles.

Always there are ducks and geese, fish and turtles.

I liked this little boy and took his picture as he watched a goose

I liked this little boy and took his picture at the park

I sat in the grass and I materials that were within reach

I sat in the grass and used materials that were within reach

On Wednesday Jonah had another follow-up appointment with the eye doc/surgeon.  It wasn’t a good visit.  I’m grateful that sometimes it is easier to handle Jonah’s outbursts/aggressions/whatever-you-wanna-call-them.  Sometimes they roll off me like rain washing river-paths along my body, navigating around my heart.  I don’t know why – I wish I could tap into those “sometimes” all the time.  Maybe it had something to do with the rain falling on us all week…

…but, at first, he was good.  Two care-givers from the school brought him up, so I felt more secure knowing they were there.  Still, I came armed with fruit snacks and a yellow octopus I’d bought ahead of time.  He liked both of these gifts.

all, at first, was fine

all, at first, was fine

He even smiled as she guided his head into the eye machine

He even smiled as she guided his head into the eye machine

She told us the pressure in his eye was 18 – nice and low.  She doubted herself and took the measurement again, and got 17.  She looked in his eye and said there was a lot less blood present.  We asked if he could go without the eye shield now but she said no.  This means he’s been wearing the thing for more than a month and has to keep wearing it for we-don’t-know-how-long.  Then she asked Jonah to sit back in the chair and he suddenly freaked, arching his back and standing up, his face melting into anger and sadness.

You can see one caregiver behind him and one in front.

You can see one caregiver behind him and one in front.

And yes, in case you’re wondering, it is awkward for me to whip out a camera at these moments to take a picture (all in the name of photo-journalism).  One more pic, and then I was required to enter the fray.

??????????????????????

Moments after this picture he bit N’s wrist, hard, drawing blood.  (The dude is about to retire; I bet he feels it’s none too soon).

After this we got Jonah down on the floor, where he thrashed, kicked, hit, head-butted…the usual whole 9 yards.  In the interest of protecting the two of us at his feet, I leaned in to take off his left shoe and BAM he thrust forward at the same time and kicked the shit out of my right shoulder and, afterward, scratched me up right between the eyes. (I never wear glasses around Boo anymore).  Eventually it took me, the two caregivers, and even the doc herself to get Jonah under control.

My tears were brief, and all for Jonah this time, whose face crumpled, desperately upset — innocent even in the midst of the aggressions.  The doc hadn’t yet done the ultrasound, which is an important part of the whole exam, but she made the wise choice to put this off, scheduling another appointment for a week away, making this coming Wednesday another anticipated & exciting attempt at examining his eye properly.

Then we somehow convinced Jonah that it was all over, that there would be no more doctor, that we were all done.  N was able to stand him up and guide him out of the office, holding both his arms.  I stayed behind to check out and make the next appointment.  Of course I could feel all  eyes on me, all the seated, (mostly) senior citizens who’d heard the screaming and carrying on, but I’m used to that.  What I’m not used to is what happened next with the elderly lady in line behind me.  I glanced at her and smiled, but she narrowed her eyes at me, the corners of her mouth turning sour-down in disapproval, shaking her head as if to say “what a shame you can’t raise a child who isn’t such a brat.”  Instead of shoving her over like I wanted to, I turned back to the receptionist, got our paperwork and appointment card, and quickly walked away.

Andy just called and said Jonah was good today, both with him and at the residence.  May tomorrow be a happy day too.

Happy Father’s Day to all the fathers out there, all the step-fathers, foster fathers, grandfathers, and people who act as fathers to others….to all the fathers no longer with us, to all the brand new fathers, and to fathers who are sick or alone, and to all the men who decided not to be fathers because they were mature enough to know they didn’t want to do it.

When it is Mother’s Day I usually also give a shout-out to all birth mothers who selflessly made adoption plans for their babies, but I don’t feel the same way about birth fathers.  Perhaps I should, but I just don’t.  At least not about the ones who don’t stick around long enough to see the whole thing through, and I haven’t heard about too many of those.   I couldn’t give a crap about my birth father…who he is, or where he is, or why.  At least my birth mother carried me in her womb and then had whatever it takes to watch as they took me away.

I miss my mom’s dad, who I called “Poppy.”  Jonah’s middle name is Poppy’s first name — Russell.   He died just after I’d gotten engaged to Andy.  I wish I could have known my other grandfather, my dad’s dad, but he died when I was a year old or so.  He was a deputy fire chief in Albany, and was just 57 when he passed away.

I honor Andy as our son’s father, and I’m looking forward to honoring my own father too, by spending some time with him and taking him out to dinner later in the day.

It has been good.  I feel like I can handle things.  And I’m grateful for that.

Read Full Post »

There is a lot to say, and I’m in one of those slumps where writing is effort and, more than effort — an exercise in telling when it is easier to stay silent.  When it is preferrable to play an online scrabble game instead, or watch another episode of All in The Family.  To bury my face in a familiar book and re-read it for the fifth time.  To sleep.

Today is M’s birthday; tomorrow we’re going to see Lewis Black, a comedian we both love.  And on Monday I went to see the Beatles band Rain at the same venue with my awesome friend K, her husband, and his sister.  Had a wonderful time, and ate, appropriately enough, at the Old English Pub first.

K gave me a gift bag when she picked me up for the show.  I had no idea why, until she explained it was a birthday present for Jonah.  Stunned, I looked inside.  She’d gotten him two cool rubbery sensory toys, a tennis-ball sized bouncy-ball that lights up, a big bottle of bubbles, and some sidewalk chalk.  I was hoping she wouldn’t see as I tried hard to keep it together but tears escaped my eyes anyway.  At least I was quiet about it.  Only a scant few times, since Jonah was three, has anyone outside my family given Boo a birthday present – or even acknowledged or mentioned his birthday.

On his third birthday, the last kids’ party I ever had for him, he was so completely disinterested.  Jonah didn’t care about the party at all.  As the kind parent guests arranged games for the little kids, I was upstairs trying to coax Jonah back to the party when all he wanted to do was sit and stare out his window.  After that I only had family parties, and, a few years later, no parties at all.  At least he had a good one this year at his residence, with presents, pizza, and balloons.

I have learned not to care so much whether or not people remember his birthday.  I get it, after all.  People don’t know what to get for a kid with autism.  Or they hear me say “he doesn’t know his birthday from a hole in the ground” and so they figure I don’t think his birthday matters.  I understand, and don’t expect.  Hell, I forget birthdays all the time.  But K’s gift sure was a wonderful surprise.

I took one of her gifts with me today when I met Jonah (driven and accompanied by J & E from school) at his retina doctor’s office.  E told me Jonah had an aggressive incident at school today and had to be held.  But he was a very, very good boy for the appointment, for all the eyedrops and demands to look here and there, the bright lights, the plastic thing to be held over each eye as we request he read letters and numbers over and over, the machine he must put his chin inside.  All of it.

Jonah was a very good patient today.

Jonah was a very good patient today.

Because he was so good, the doctor got a better look inside his eye then she ever had before.

I’m sorry.  That’s all I can write tonight.

I’ll come back tomorrow, or the next day.

I love you, precious Boo.

Read Full Post »

%d bloggers like this: